[00:00:30] Dannelle: When Kris’s grandmother moved in with her six years ago, she had no idea sharing her care partnership online would garner over 500,000 TikTok followers. With some of her videos reaching 4 million views. 

[00:00:49] [Audio from one of Kris’s TikTok videos plays] 

[00:00:49] Kris: You’re so beautiful! 

[00:00:50] Grams: And you are too.  

[00:00:52] Kris: Aww. 

[00:00:52] Grams: [Laughs]  

[00:00:53] Kris: Thank you.  

[00:00:54] Grams: [Laughs]  

[00:00:55] [Audio Clip Ends] 

[00:00:55] Dannelle: What originally started out as a platform for viral videos and dances has now become a resource, support system, and lens into the life of caregivers all over the world.  

[00:01:13] Welcome to The Caregiving Soul! I’m Dannelle LeBlanc. 

[00:01:20] [Music Ends] 

[00:01:20] Kris: I remember the exact moment that I told her she was gonna come and live with me. And it was like fireworks were going off and she just was so happy. You could just see, just she had this feeling of just joy [Music] come rush over her. And since then, it really, we just focused on our bond of love. I think a lot of times people wanna focus on dementia and Alzheimer’s and I think at first that’s what my family was trying not to do. 

[00:01:49] We were trying to preserve my grandma. And so, when she moved in with me, really wanted to try to give my grandma an environment that she could be safe and flourish independently. I wanted to keep her doing what she normally would do if she wasn’t with this disease. And so, every day we just did our little chores and our little things around the house, and I just tried to keep that independence. And I think that has really helped her kind of maintain her strength as well. 

[00:02:18] [Music Ends] 

[00:02:19] Dannelle: How did you know to do that?  

[00:02:21] Kris: Yeah, at first, I really didn’t know anything about dementia. I just was trying to focus on my grandma’s behaviors and what was bothering her or aggravating her. I noticed that my grandma’s triggers, that she would get triggered when people would tell her no, or that she couldn’t do something, or that she was wrong. I I really picked up on that quickly that when we were trying to explain reality to her, it was frustrating and aggravating. And so, I just wanted to try to do anything to eliminate that.  

[00:02:48] I am very fortunate, when I first took my grandma in and I first started saying, okay, what is dementia and how do I learn about it? I went on to Google like most people, and thankfully, I am so fortunate that one of the first people to pop up was Teepa Snow, and I really saw this woman start teaching about the behaviors and about understanding dementia, and I really tried to devour everything that she put out and really learn, and I, I felt like she was a true lifesaver because before that, everything that I read was scary. It was how, you know, there’s no real way to help these people.  

[00:03:25] And I noticed that the more I spoke to my grandma, the way I always had, there was this distrust that was building between us because my grandma would say things like, “umm”, like she didn’t recognize certain people, and I would try to explain to my grandma, “No, that is Casey. I’m Kristen, I’m not Kelly, I’m Kristen”, and all of confusing things for my grandma. Whereas when I watched Teepa Snow, she was teaching on how to live in their world and kind of enter where they are. And, and you don’t always have to be right. It doesn’t have to be right.  

[00:04:01] Dannelle: It’s funny because our cognitive brains can actually get in the way [Music] of our relationships, and that we are actually at our core emotional beings.  

[00:04:16] [Music Ends] 

[00:04:16] What are some of the biggest adjustments that you had to make personally and in your home environment to care for your grandmother? 

[00:04:25] Kris: At first, as far as in the home, when my grandma first moved in with me, we had post-it notes and whiteboards everywhere to specify and identify what things are and what they were used for. And then as she progressed, we started having to hide the dangerous items, you know, we had to start locking away the knives. We had to put our detergents and our soaps in places that weren’t easily accessible because we were noticing my grandma adding soap to her cereal. Like things that we thought she was doing fine independently, we then started noticing odd behaviors.  

[00:04:59] And then as it got worse, obviously we had to get new locks for the door, to prevent wandering. My grandma did go missing once for six hours, and that was by far the scariest day of my life. And so, literally she got home, we went to Home Depot and we got new locks for the door and changed all of that.  

[00:05:17] As far as in the home was learning that nothing is safe. There were things that meant a lot to me or were personal that I didn’t want her to touch, I had to learn to hide that stuff and put that away and just keep out what was okay to be lost or damaged? Because sometimes that’s just the way it’s gonna go.  

[00:05:36] As far as my personal life, I mean, everything changed. I was a 29-year-old photographer and bartender, and so I really had no schedule and I was just kind of get up and go whenever I wanted. And so, taking care of another human being changes that whole thing. So now, in order to even just step outside I have to plan and prepare. So yeah, it’s a big change. 

[00:05:59] Dannelle: A huge change, and especially with it being a progressive disease, it’s not just changes that you made to adjust when she moved in, but also, to continue those based on her behavior and as the disease progresses. Can you talk a little bit about what ways that a routine has helped you to manage the unplanned? [Laughs] 

[00:06:25] Kris: Oh, a routine and a schedule has saved our every day. So, for us, we we eat the same thing. She drinks the same stuff, and it has, a lot of people are like, why are you giving her the same stuff every single day? I noticed that when I would try to get creative and give her different lunches or breakfast, she wasn’t as engaged. For us, keeping it simple and doing the routine really helped her thrive, and I think it almost created this kind of muscle memory to where my grandma, when she’s finished eating breakfast now she goes right to the sink cuz we do dishes after breakfast, and it’s like been years now that she does this. Even when she progressed and has lost her vocabulary and different things like that, the movement is still there. She seems to know after breakfast we do the dishes. 

[00:07:15] It’s just been really kind of incredible to see how that repetition, and that pattern, has helped her thrive independently as well. A lot of it is I show and she can do, and as the disease progressed, we’ve switched and altered some of our activities. So, in the beginning she used to help me cook breakfast fully. Now she just scrambles the eggs, but she still is involved in some way. And I think that has really, been helpful with our routine that we stick to the same thing kind of every day. Obviously, we go with the flow. Things are gonna happen and you’re not always gonna know what to expect. But I think having that schedule for her has really helped. 

[00:07:57] [Music and audio from one of Kris’s TikTok videos plays] 

[00:07:59] Grams: You’re like a doll!  

[00:08:01] Kris: You’re a doll! You’re like my doll.  

[00:08:07] Grams: Exactly.  

[00:08:08] Kris: Exactly. 

[00:08:09] Grams: [Laughs] So funny. 

[00:08:13] [Music and Audio Clip Ends] 

[00:08:13] Dannelle: The idea that the rhythm and the movement creates a muscle memory that can help manage those unexpected changes – there is a very steep learning curve to learn how to care for someone with brain change. What other resources did you find were most helpful in learning how to navigate daily care and grow your relationship with your grandmother in a different way? 

[00:08:48] Kris: Honestly, I have to say that social media has been the best and biggest help and support for me. And just seeing the way other people care and just having that support system of others who understand what you’re going through was really beneficial. And then, from there I was able to find more resources.  

[00:09:08] I mean, [Music] in the last six years, social media has kind of blown up with caregiving advice, not just caregivers, but now there are speech language pathologists and occupational therapists and nurses and all of these people really sharing their knowledge. And I think it has been so beneficial. Maybe not everything works for us or works for where we’re at at this stage in our journey, but just seeing and knowing that you’re not alone is everything. 

[00:09:39] Dannelle: That is so true. [Music Ends] It never occurred to me to reach out on social media when I was caring for my father-in-law, and I can see now how beneficial it is, not just to see other people who are experiencing the same types of challenges and emotions of caregiving, but also just the medium itself, being something that is accessible at any time, on your own schedule, whenever. 

[00:10:11] And in particular for you and Grams, there’s this generational gap that we don’t see as often as we may see people who are caring for a parent, and I’m wondering how that generational gap defines your daily life and how you relate with your Grams. 

[00:10:36] Kris: I really was drawn to her my whole life. I say it often that we’re soulmates, we have a soul connection. And so, the generations never meant anything to me cuz I moved in with my grandma after high school. I moved in with her after college. I always wanted to be with my grandma. I thought she was the coolest woman on the planet. So, I’m thankful that I was raised with her in my life, my daily life. She was someone that was there through and through day in and day out. And so, I’ve been able to hone in on that bond and really it’s only grown. I think I really hold on to that love and I try to focus on that. 

[00:11:17] And so, for me, a lot of people are like, but does she know who you are? And that’s the number one question I get asked. And no, she can’t say Kristen, but the look, the handhold, the touch, the hug, everything else says, yes, you’re my granddaughter. Yes, I will never forget you. I trust you and I love you. And I think that’s been really important for us is that I hold onto that love in the heart. The heart doesn’t have a memory. It’s not, you know, it’s not the brain. It’s not gonna forget. Love is an emotion. And like you said, we’re emotional beings. And I think that really holding onto that has been so helpful. The words don’t matter. Words aren’t everything. 

[00:12:00] Dannelle: Being open to seeing and recognizing all of these other ways that love is expressed, the touch and the look in her eye, that have so much meaning beyond being able to remember your name. How do you define a caregiving support system, Kris? And what does yours look like? 

[00:12:26] Kris: So, I am very fortunate that at the start of this journey, my family was very on board. We had what we called our care squad. I was the primary caregiver, but my mom would keep track of doctor’s appointments and paperwork. My sister, she has two kids, and I would pick them up from school with my grandma and then my sister would make us all dinner. So, we had this really nice kind of community of care. We were caring for one another.  

[00:12:53] I’ve learned a lot through my social media that a lot of people go through these hardships with their family when it comes to caregiving. I thought I was the exception. I was like, my family’s great. That will never happen to us. And after six years people are like, okay, when is enough enough?  

[00:13:11] For me personally and the relationship I have with my grandma, this is a forever thing. Like, no one knows how long this disease is going to progress or last for, but I would like to continue this level of care for as long as I’m capable. We did recently get palliative care and I know that in the future we will look for hospice for additional support services, [Music] but yeah, [Laughs] that’s where I’m at right now. 

[00:13:38] Dannelle: It’s so tough to constantly [Music Ends] have to not only adjust to our loved ones changing care needs, but you know, also to make adjustments to our support system, and to sometimes be in an uncomfortable position to have to make a decision that is best for our care partnership, regardless of people’s well-intentioned concerns or, or questions that they may have. 

[00:14:14] Kris: I feel like I have found some of my best friends just from sharing my journey online, and so that support has been invaluable. Like if you can find people that you trust that are going through something similar, I think those are the best types of support.  

[00:14:31] Dannelle: Yeah, it’s a very unique and special kind of friendship to find because so often, especially for, I think with younger caregivers, you have an existing group of friends who are doing their thing and don’t necessarily understand or can relate to the challenges that you’re going through. And so it’s so important to reach out and to forge these new friendships. So, I’m so glad you brought that up. One of the things that I noticed with your TikTok, Kris, was the, your niece and nephew and how you include them as part of your support system.  

[00:15:18] Kris: Oh, I call my niece the best junior caregiver on the planet. My grandma was diagnosed when she was five years old and moved in with me. I lived around the corner from my sister. So, my niece is now 11 and she’s been involved from the start. She’s at an age now where she remembers her great grandma, knowing who she was. And so, my niece has really been there through it, and we’ve explained it to her as best we can for a child’s mind. And she really seems to grasp the concept. I think that she’s watched me, and her mom interact with our grandma and she’s kind of picked up her own little tricks. It’s truly incredible.  

[00:15:59] I know many people have said that they are afraid to bring their younger ones around the loved one with dementia out of fear and all of this. But for us, it actually has proven the opposite. It has been so beneficial. My grandma becomes almost a different person when the children are around, she has energy and she wants to help them, and so we let her think she’s helping them when they’re really helping her. And it, and it is such a beautiful thing to watch.  

[00:16:28] [Music] 

[00:16:29] I have a viral video of my niece. It’s at almost 4 million views where my grandma started getting angry. And so, to calm my grandma down my niece pretended to cry and was like, “Ohh”. Not that my grandma was upsetting her, but my niece was like, “Ohh, I’m sad. I don’t feel good”. And my grandma snapped from being angry to, “Come here, honey, let me help you”. And my niece goes, and my grandma comforts her, and my niece is like laughing. She’s like, “hehehe”.  

[00:16:59] You know, she wasn’t really sad, but she wanted my grandma to stop being so angry. And so, her little mind just was like, let me be sad. Grandma seems to really resonate with helping others. And so, that just happened out of my niece’s little brain. And yeah, my grandma calmed down, comforted my niece, and then all of a sudden redirection – my niece and my grandma started coloring. All within just a few moments of going from screaming, cursing to now let’s play together. And it really was just incredible. It’s amazing. 

[00:17:34] [Music Ends] 

[00:17:35] Dannelle: That is amazing. And it just reinforces the concept of connecting through emotion. Wow. That is so special.  

[00:17:47] Kris: I knew that for me, I didn’t want my sister’s children to fear my grandma. My nephew had a little bit of a harder time because he’s only eight now, and so he was a baby when my grandma knew who he was. But because of these conversations that we’ve had with him, he’s able to still enjoy spending time with her. My grandma calls him by her little brother’s name. And he just rolls with it. Like that’s who he is now in great Grandma’s mind. In Gigi’s mind, she’s very young. So, she sees him playing and she doesn’t think he’s the great grandson. He thinks he’s the brother.  

[00:18:25] Dannelle: I watched a video where you had a day off or you had a couple of hours off and you were talking about making a decision to be a little bit more selfish with your time, which I’m gonna reframe as being more “self-full” with your time. And, I’d love to know what does that look like? What does being more “self-full” mean for you right now? 

[00:18:54] Kris: For me right now, it’s really listening to myself. I am an empathetic person by nature, and I think sharing my journey on social media has been so helpful, and I think that because of my level of care and wanting to help other people, I was refilling so many other people’s buckets by going on social media constantly and sharing and helping, and “I’m in the DM’s, come, I’ll answer your questions” and I still want to do that and I still love to do that, but I think setting a schedule and setting up time for me so I’m not drowning in other people’s constant need for help. Because it is out there. So many people don’t know resources and so many people don’t have the education. 

[00:19:37] And so, because I feel like I have this knowledge to share, I was getting wrapped up in it. I was getting so caught up. I’m still a caregiver. I’m still taking care of my grandma 24/7. I still am working. I’m still a person, and so I felt that with the social media aspect of it, I was almost giving too much. Not that I was giving too much, but I wasn’t refilling my cup. 

[00:19:59] I wasn’t doing things solely for myself. I need to focus on me, take that moment for myself. I do that in my daily life as far as a caregiver for my grandma so I don’t get burnt out with caregiving. I take those moments to meditate. I take it if I’m getting frustrated, I step away. and I really try to schedule time for me to do things that I enjoy.  

[00:20:22] Dannelle: And so, Kris, specifically, what does your “self-full” care look like? 

[00:20:28] Kris: So, for me, currently I really try to focus on the things that I can do daily. So, it’s silly, but even getting up and putting makeup on and choosing the clothes I wanna wear – that is self-care to me. Self-care is the expression I have in the outfit I choose, or in the hairstyle I wanna wear. And so, it’s little things throughout the day that help me remain myself. That to me is self-care. I think that’s really important.  

[00:20:56] A lot of times people are like, “It’s a spa day. Go get, go, you need a spa day”. I’m like, a spa day isn’t gonna help my brain. It’s not gonna help me with burnout. As soon as I get back from my spa day, I’m gonna be just as stressed. So, for me, it’s really implementing these little things every day that I don’t lose my identity in.  

[00:21:16] I really take the time to meditate and if I feel clouded or stressed, I’ll take a few minutes to breathe. I think that breathing is one thing that people don’t even recognize [Laughs] as a form of self-care, but how many times do we not just breathe? That deep breath in and out can take just a second and you can feel like a whole new person because of it. 

[00:21:39] I also go to therapy regularly and I think that is so beneficial. I think every caregiver needs some sort of support in that sense. I also journal, so when my grandma goes to bed, that’s me time. So, I do whatever I want. I start with my journal, I’ll write down my thoughts for the day. And then I do a creative journal as well. 

[00:22:02] [Music] 

[00:22:03] Dannelle: I love your definition. So, self-care is anything that helps us feel like more ourselves, that brings us joy. And also, it’s so important that it’s something that we can do daily. It doesn’t require that we go somewhere. 

[00:22:29] [Music Ends] 

[00:22:29] Kris, you share some fun facts about your Grams and about yourself on your site, and one of the things that stood out was your shared passion for dancing. What other passions and values has your grandmother taught you, and how did they show up in the care relationship you now share? 

[00:22:51] [Music] 

[00:22:51] Kris: My grandma taught me unconditional love, and that is the forefront of our care relationship, that love, knowing that the love is there is is so important. My grandma, yeah, we love dancing. My grandma is an Italian New Yorker. I always say that cuz that is like her definition of who she is. And so, cooking has always been a big thing in her life. I really try to maintain that. We’ll cook and do things together. Even if she can’t fully be hands-on, just having her in the kitchen when I’m making dinner and things like that to keep her involved in it, even the scents and the aromas of what’s going on while we’re cooking. 

[00:23:29] Also, my grandma has done my hair my whole entire life. Every special event I’ve ever gone to, my grandma was the one who curled it. So, I’ve tried to maintain that. She did get my hair caught in the curling iron last October, so we don’t curl it anymore. But she is able to help me brush my hair. She helps me blow dry my hair. even just touching my hair. Um, I know that always brought her a lot of joy. So, I think those lessons that my grandma instilled in me growing up and, and just how to be confident and happy, and family, that’s what we do every day. We thrive on on those values that she, she taught me.  

[00:24:10] [Music Ends] 

[00:24:10] Dannelle: You do such an amazing job in encouraging and supporting your Grams in who she is.  

[00:24:19] Kris: Taking care of my grandma has really helped me kind of slow down and realize what is the most important in our life. And so, for me, my grandma has just given me much. She’s given me reasons to continue on and want to keep on thriving and learning and growing in whatever this world has to throw at me.  

[00:24:40] Prior to being my grandma’s caregiver, the dark times felt really dark. I think that it was really hard to see positive in the sadness of things and since being my grandma’s caregiver, um, not to be like all toxic positivity, but [Laughs] I have been able to kind of rework my own brain into seeing things in a better light, and just finding that even in grief and sadness, we can grow and and we can learn and become better.  

[00:25:09] And so, I’m really, really thankful for this journey and this opportunity to learn from my grandma. Even though she has this progressive terminal illness, I still feel like she’s teaching me every day how to be a good human and continue on. 

[00:25:25] Dannelle: That’s definitely positive positivity.  

[00:25:29] Kris: [Laughs]  

[00:25:29] Dannelle: When we acknowledge that there can be terrible things that happen, there can be very dark days, and simultaneously we can still create and find joy, that those two things are not mutually exclusive, but can exist at the same time.  

[00:25:51] Thank you so much for joining us on the Caregiving Soul, Kris. It has been an absolute pleasure to hear your story and to share your life with Grams. 

[00:26:03] [Music] 

[00:26:07] Thank you for joining our conversation with Kris McCabe. Kris’s ability to support her grandmother’s core self while still maintaining a daily self-care practice of her own is a great example for all of us in a care partnership. These daily intentional choices can help prevent burnout and create a deeper connection with our loved ones.  

[00:26:37] Kris mentions Teepa Snow, a guest from season one of The Caregiving Soul. All of her information as well as how to connect with and follow Kris is linked in our show notes. 

[00:26:52] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including transcripts and relevant resource links. 

[00:27:05] For bonus content from this episode, including additional information on teaching children about brain change, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod.  

[00:27:26] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:27:43] And remember, the right care includes care for you. 

[00:27:50] [Music Ends] 

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